December 1, 2023

Empowering Carriers of Duchenne: New Carrier Publications Resource

Being a carrier of Duchenne can feel isolating and misunderstood, especially for those who manifest symptoms. Earlier this year, PPMD began holding monthly support meetings for manifesting carriers to talk through their experiences, raise awareness,…

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October 5, 2022

WATCH: Psychosocial Considerations for Women in Duchenne (Webinar Recording)

While we often think of the physical aspects of Duchenne and Becker muscular dystrophy, we don’t often talk about the emotional effect it has—especially for caregivers. As part of World Duchenne Awareness Day’s emphasis on…

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September 21, 2022

WATCH: Medical Management of Women & Carriers (Webinar Recording)

WATCH: Medical Management of Women & Carriers (Webinar Recording) As part of World Duchenne Awareness Day’s emphasis on Women in Duchenne, PPMD recently hosted a webinar titled, The Medical Management of Women Carriers of Duchenne….

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September 16, 2022

ImagingNMD: Expanding Natural History Studies in Duchenne, Becker, and Carriers

Are you interested in contributing to clinical research to understand how muscle changes over time in Duchenne, Becker, and manifesting carriers? University of Florida’s ImagingNMD group has several studies currently recruiting participants to better understand…

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April 7, 2022

Carrier Care: Driving Improvements & Breaking Down Barriers

“Are you a carrier?,” they write in the hushed tones of private groups on social media, attaching anxious face and blue heart emojis in our new lexicon of connection and permission to express. What they…

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March 30, 2022

WATCH: Carrier Cardiac Care (Webinar Recording)

PPMD hosted a webinar on March 22, 2022 to discuss cardiac care for female carriers of Duchenne and Becker. Panelists discussed the importance of carrier health, learnings from the PPMD-sponsored carrier study at Nationwide Children’s…

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March 14, 2022

PPMD Awards $50,000 to the University of Pennsylvania for Launch of Duchenne and Becker Carrier Clinic Pilot

PPMD has always prioritized and advocated for optimal care for every person living with Duchenne and Becker. This began with the development of the care considerations, which translated into the standards by which PPMD’s Certified…

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September 22, 2021

PPMD Continues to Support Carrier-Focused Research with Latest Award

Throughout the years, I have learned a great deal from working with boys and young men with Duchenne and Becker. I have also come to know their families well and a common concern for families…

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August 3, 2021

New Resource! Duchenne Carriers: Your Questions Answered

Duchenne Carriers: Your Questions Answered Being a carrier of Duchenne can affect so many aspects of a woman’s life, including health care, family planning, and mental health. As part of our efforts to better understand…

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April 13, 2021

Females with Dystrophinopathy: Publication of PPMD’s Pre-Conference Meeting Summary & Recommendations

Much has been explored about males living with Duchenne, but what about the many females who are living with symptoms (i.e., skeletal muscle weakness, cognitive issues and/or cardiomyopathy) of this diagnosis? In June of 2019,…

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